Being a parent isn’t always easy either. I have found, over the past seven years, this has been even more apparent as a parent of three small children who include my oldest child, Freddie. Freddie has an extremely rare De Novo Genetic condition called TUBA 1A. We only received this diagnosis after more than four years via a genetic testing study. Up until this point, we had no answers at all.
We found out at my 20 week scan that his brain wasn’t developing as expected and that was the start of an awful lot of heartache and stress. Each week we would go to the hospital for scans and tests. None of them ever gave us any answers. The Doctors could only tell us what it wasn’t and not what it was. Due to the ever increasing list of issues presenting themselves with his irregular brain development, we were advised that we could still go to panel to decide if it was appropriate to terminate the pregnancy, up to 39 weeks.
Freddie was born spontaneously as 35 weeks.
There was no real support for us, other than regular trips to the paediatrician. There was no signposting and there were no leaflets, even as a minimum. We were sent home to ‘wait and see’.
After the first six months of Freddie’s life, pretending to ourselves and the outside world that he was going to be fine, we finally had to admit he wasn’t. Freddie was delayed in every area. He was floppy, he hardly moved, he couldn’t sit, he didn’t babble, couldn’t hold his head up well and had terrible reflux to name just a few issues. He has microcephaly and as a result he had an extremely tiny fontanel. We were looking at the possibility of having to have his skull cracked open to allow his brain to grow. We managed to escape this horror by taking him for treatment with an amazing practitioner who works in the osteopathy arena with the Well Being Technique.
Although, I was and still am very lucky to have a loving and supportive family and group of friends, plus I found SWAN UK, the only charitable organisation to support families of children with Undiagnosed Genetic conditions, I have always been very aware this isn’t the case for everyone. I also recognised that even with that kind of support, something was missing. I needed support and coaching in how to manage this situation. This version of life that I wasn’t expecting. Not just the emotional side of grieving the child I thought I would have and the sadness over the challenges that lay ahead but practical support. I needed a way to deal with all of the appointments and meetings. The information I was receiving and the new knowledge I was having to learn and understand, which impacted the decisions we were making on Freddie’s treatment and therapy.
I became so stressed during the first few years of Freddie’s life that I ended up in the Neurologist’s office myself. I was suffering with excruciating head pains that lasted for days at a time. I was convinced I had a brain tumour. The end result was that it was the level of stress I was under that was causing my physical pain. At this point, I knew I needed to make some changes. For me, for Freddie, for our second child and for my marriage.
I have spent a lot of time with supportive friends, received coaching, read lots of books and worked hard little by little to build up my emotional resilience and put into practice some of the techniques I had learnt.
Towards the end of 2016, I launched my blog – Aimee Mann Mentoring, along with a plan for mentoring and supporting other SEND parents just like me. Then in February 2017, with the support of Lynne Barton at Entrust Care Partnership, I launched a set of workshops. I totally believe that anything is possible and that I can achieve whatever is needed for Freddie. I wanted to share the exact techniques that I use successfully, in the hope it would give others strength and progress.
More than 100 people have attended Aimee Mann Mentoring workshops and this year we are running both the Getting Your Voice Heard – How To Be A Velvet Bulldozer and Building Your Emotional Resilience – The Ebb and Flow of a Special Needs Parent workshops. I also have a secret Facebook group for anyone who has attended one of my workshops. It is a totally safe space to chat, share challenges and successes and receive further mentoring support. Plus, I do a Facebook Live event once a month.
I am so delighted with how my workshops have been received. Feedback is positive and we have had some amazing success stories. One of my attendees, who came to her first workshop in November last year has turned things around so much. She was pretty broken when I met her and cried during the workshop. (We often get through quite a few tissues). She has now, using the strategies I shared, been able to take control of the situation and she has successfully secured the best educational setting for one of her sons, with full support and transport in place. She is on cloud 9. As am I. This is just one example of the power of empowering parents. I love being part of this tribe of empowered SEND parents.
I am running the two workshops, with the support of Lynne Barton at Entrust Care Partnership, throughout this year in Warwickshire. I have plans to widen this geographically in 2019 and I will be adding another one or two workshops to the series, plus some on-line courses.
The next set of workshops will be held in Stratford Upon Avon. Getting Your Voice Heard – How To Be A Velvet Bulldozer will be on June 15th and Building Your Emotional Resilience – The Ebb & Flow of a Special Needs Parent will be on July 5th.
You can read my blogs at www.aimeemannmentoring.com and sign up for my bi-monthly Mentoring newsletter here as well. You can also find me on Facebook at www.facebook.com/aimeemannspecialneedsmentoring
“I attended Aimee’s recent workshop empowering parents in advocating for their special needs child ‘ how to be a velvet bulldozer’. It would be difficult to believe that Aimee didn’t know the audience prior to the meeting as she spoke so well and connected with every parent there. Such good advice and techniques to support as well as compassion and understanding. Thank you Aimee for sharing your journey with us and helping us take the next steps forward.” Julie